I am 75 years-old and developed MdDS over ten years ago without ever disembarking from a boat cruise. My condition has been progressively worse to this day. My plans for retirement have been ambushed by this dreadful disorder. If you share my grief, my heart goes out to you.
I am 71 & this started about a yr Ago !! I feel the same as you...finally can do alot of the things I never had the time or money to do BUT NOW I GOT THIS CONSTANT 24/7 SHAKING !!! It has overtaken & ruined my life !!! BUT I WILL BEAT IT !!!! PERIOD....
I got MDDS after a 14 hour plane ride in 28 August 2018. I’ve had upper cervical specialist chiropractic treatment which rid me of the migraines and I was able to go into a supermarket again. Tinnitus is severe too. Pressure in my head. I’m trying the stripes next. I have also been going to the Energy Enhancement System for 2 hour sessions. Scalar waves and photonic light. It’s has definitely helped lower the rocking symptoms and pressure in my head. I will keep going as I’m desperate to be ‘normal’ again. It’s a horrible silent suffering syndrome. Everyone sees you as normal and can’t understand what it’s like. Thanks for all the info. They really haven’t heard about it here in Australia so I’ve had to work it out myself. Very isolating.
I just had MDDS for about 1 week ago, but as of writing I'm feeling super duper a lot better, almost no shaking or bobbing at all. I think what helped me was the standard optokinetic and vestibule-ocular exercises I applied. Hopefully the VR Optokinetic therapy gets improved and be brought to maturity.
Symptoms are aggravated from many of the same triggers as those with migraines: weather/barometric changes, stress, lack of sleep; computer lighting, etc.
One doctor visit away from a diagnosis. It seems to be pointing to spontaneous MdDS after a brain tumor where they surgically removed my vestibular nerve. Rocking, bobbing, and swaying ever since. It’s debilitating, and life changing.
I have been suffering with MDDS on and off for 8 years. This has been brought on by travel on a boat and snorkeling while in Hawaii, it started February 13 and is still there today May 10 . Every time this has happened I was on a boat and long car drives, each trip over an eight year period to Hawaii , Alaska, Hawaii, Florida, Hawaii .I found relief using the OKN stripes that were suggested by another vestibular specialist, This is the only thing that has helped, but I still feel it when I am very tired or low blood sugar. My MDDS has lasted as long as 4 months I hope it goes away soon….
I have been trying to see him for quite some time to help me with my dizziness. I feel I have MDdS and Vm and am desperate at this point. Glad he is sharing info via UA-cam for those of us suffering
Hi, just wanted to share that I suffer from mdds as one of the debilitating symptoms from a spinal csf leak, which causes intracranial hypotension, not enough csf fluid surrounding brain. And in my csf leak support group of 7000 people this is a super common symptom among us. Just thought I would share.
Thank you for making this video. I got off a cruise last week and the sway won't stop. Hopefully, it will go away within a month, and if it doesn't I will see my doctor.
I began having mdds symptoms within a day of my first vaccine. Symptoms got significantly worse after the second dose. I have no prior history of vestibular problems. Still in the process of getting a diagnosis. Thank you for addressing this. Appreciate the information!
Its another of the Neurological side effects of the vaccine. It was once described as “Rare” but no longer, (which makes me consider my vestibular system may have been vax injured yrs ago making me susceptible). My mdds began 20 yrs ago after a daylong whitewater rafting trip. Took me a few years to improve and regain. Since then I do daily;balance, stretching, & vestibular/eye exercises to maintain. Dr Danielle Tate mentioned a patient had improved physically in their balace etc, Yet they said they felt the same symptoms still in their head. I can understand this.
I think I have MDD, I was diagnosed with VM about six months ago , although I have had the symptoms for over 18 months, I feel as if I’m swaying or rolling most of the time, although usually after sleeping I’m fine in the morning and symptoms gradually get worse during the day, I do walk every day and get the sensation of walking on sponge but also creeping numb feelings in my feet and mostly back of the legs which disappear overnight, I wonder if uni have come across such leg sensations before. I get a headache, occipital most days which gets worse at night, but again goes by morning and then gradually comes back most days. I’m not on any medication at present apart from calcium channel blockers for raised blood pressure which is linked with the headache spasmodically at night. I work part time as a therapist and usually on Zoom. I enjoyed the presentation, so helpful and have also found your book on VM very informative. Thank you, everybody needs to know more about VM. I live in London UK.
I have a lot of your symptoms for about a year now dizziness 24/7, I try to walk everyday and like you feels like walking on sponges along with numb feelings in my feet, those improve when taking shoes off. Sure is horrible
I feel exactly the same a specialist diagnosed me with VM but I'm convinced it's mdd I feel fine in the morning but after I go work I gradually feel worser and worser at night is horrible I'm always watching the clock for bedtime it's like it's the only cure going to bed then waking up to the same thing. I work as a forklift driver so motion is always there I like my job but it's so frustrating knowing it's going to cause me problems.
I suffer from mal de debarquement syndrome since 2018 after a sailing boat cruise of 7 days and a subsequent flight to come back home. Symptoms have never subsided since then. My life has changed forever since this illness. Some periods the symptoms are bereable and at a baseline where I can function. Some periods the symptoms are unbereable.
I had MdDS for a long time but symptoms were very light, enough for me to ignore it. Then I was on a plane and after the return trip there was significant change and it was a lot worse. Then I moved to another state and drove the whole way and now its like everyday, every second its pulling and pushing me around. Its terrible
@@k.baller5140 I don't know if this would work for everyone but I found that exercise helps a lot. When I do planks and strengthen my core that helps. And then every day I balance on one foot for as long as I can and then do the other. It helps by a lot.
Has anyone ever heard of this being started related to the use of psych meds? I’ve had this for 25 years. It Started after tapering off an anti depressant and a benzodiazepine which I took for a short time. When i tapers off, I told the dr of the boaty waterbed pulling sensation , I was told it was a worsening of anxiety and to get back on the medication. I got better for a year tops maybe, since that first year back on the anti d/benzo, I have been battling a worsening of the condition, at first tolerable but slowly completely disabling for all those years, trying one anti d after another. I am looking for hope.
Hi I started rocking from the side effects of sertraline and am still rocking three months after stopping them. I’ve been trying to find someone that has had the same experience from taking antidepressants. When you try to sleep do you feel like you’re going to float away and pressure in your ears?
Thank you Dr. Shin Beh, MD for what you say at 3:05 :-) Part of the name -debarquement - is replaced with spontaneous gravitational pushing from all directions for me. With the most painful symptom being a sense of metal, rocks, or sand blasting through my head with varying speed, force, pain, and direction. Many other symptoms too.
Yes, but at least they care enough to talk about it. I'm very depressed with almost all my experiences with my local medical community. I can't work, so I'm on government health care. So you don't have much freedom to choose who you can see, and their diagnosis. MdDS [Spontaneous for me], has made life very difficult in so many ways. From not believing I have anything that bad, misdiagnosis, telling me to relax & it will go away ( LOL ) BS, 24/7 pain without any pain meds ( don't and do want some, maybe ), and just trying to describe so many & varying disabling symptoms.
I have been diagnosed with vestibular migraine...I have all the symptoms of MdDS as well....the rocking motion, walking on a trampoline, etc and my balance issues were mitigated while I was on bezo's...my neuro didn't want them used long term so I tapered off and am on Zoloft...the rocking motion/trampoline etc. has returned, but my balance has not been impacted. I assume the Zoloft is helping the balance issue but not the rocking/trampline issue...I recently went on a car trip, 12 hours each way and the MdDS symptoms worsened, it was like they were on steroids...I'm home now, a couple of days as of this comment and it's improving...but I think I may need to go back on benzos to get relief if it doesn't settle in a few weeks.
I got it in 1982 and it seems like it might be from stress. I never heard the term until about 2004 so I didn’t understand what it was or how I got it or what to do about it. I am dizzy every single day 24 seven and also have the gravitational pull or feeling like I’m being thrown across the room when I’m sitting or feel like I’m slipping when I’m not moving or feel lightheaded like I’m going to faint and always have brain fog 24 seven. I also vibrate at times and it’s really difficult to sleep for the movement, the vibration, and feeling like I’m going to fall out of bed like it’s slanting.
Hi, i would like to share my experience. I had panic attacks , anxiety and depression years ago and after that i developed chronic dizziness. For many years doctor couldn't not diagnose , they only say that it is due to anxiety. I couldn't agree to them anymore as my anxiety have been cured. I am experiencing the symptoms since 2014. There is no relief in my symptoms. I just feel off balance, unsteady feelings, swaying left n right, rocking and feel as if my legs are not grounded on floor and the floor feels like moving upside down like a seasaw. The symptoms increases when i walk or travel but that is not only case , it comes even i am not doing anything. What best i try to do is just calm down, do positive affirmations but this is not working. I am confused if it is pppd,mdds or migraine.please help
Just watching this video - helpful information. Had random onset MdDS in 2018, but didn't learn what it was until 2019. Over this last year I am now getting migraines, which wipes me out even more! Dr. Beh is three hours away - I think it's time to make an appt! Can someone tell me the difference between VOR and VRT?
Anyone here that has/had spontaneous MDDS use brain retraining (DNRS) or heard of (German New Medicine) GNM to heal? I am curious what Dr. Beh has to say about it? I have reason to believe spontaneous MDDS happens when the nervous system is activated due to a "threatening" (very stressful) situation, so the fight or fight kicks into high gear and affects the amygdala even possibly the cerebellum. I have spontaneous MDDS and VT never really worked for me because I don't feel out of balance and I can drive and exercise just fine. It's the constant internal movement that is always there.
Yes I've watched Dr Gates and he does a good job of explaining what he has seen and worked with + what other dr.s have found out as well. I've been affected since 2017 . My daughter found this after searching for 2yrs. Brain retraining is a good approach.
My name is Chris. I have been suffering for years from motion triggered swaying. I have avoided air travel for years because of the symptoms it causes me. Most of the time it feels like I’m walking a trampoline and being pulled forward. My head movement seems exaggerated when I’m sympathetic. I also have had issues similar with feeling like my eye movement is out of control. I do suffer migraine but triggered by going from dark to light. I suffer anxiety and depression. Ironically I have to fly for my appointees. I have had a an eval at HomeBase in Boston by a Vestibular PT and have many issue. I just want to do something that will shorten my symptomatic period. So far my longest symptoms are up to 3 months and as short as two weeks. Oh also walking on docks throw me off. Cruises suck. Duration of flights and cruises determine the length of my symptoms. The cause of symptoms like boat or plane when continue make it worse. Car rides for some reason make it better. Walking makes it worse. Cars seem to the only thing that helps. Definable symptoms worsen as the day wears on. I also have had a TBI. I suffer from endocrine dysfunction. Low growth hormone, high prolactin, cortisol collapse syndrome. I also have migraines.
I just found one funny thing, I CAN nod my head a little and it’s help like 99%, the more funny thing is that iDONT have to actually physically nod, just think, like imagine, that I’m nodding my head and it help like 70-80% of my symptoms
I have it for 2.5 years. It started after I missed the bottom stair coming down and took some steps across a door space and banged the left side of my head, flat against the wall. I did not fall down, was not knocked out. About 3 weeks later I noticed when I stood at the sink, washing up that I had the kind of motion feeling that I had had when I was in my 20s and flying regularly. I had not had it later in life until this bang to the head. I am 75 years. Anyone else had it start after a minor head injury ?
Amazing little episode. Had a patient today I was evaluating and I was stuck between vestibular migraine and MDDS since they had photophobia motion sensitivity yet reported oscillating and feeling like they are on a boat. Negative for BPPV, ruling out hypofunction next visit, the vestibular world is full of complexity haha.
I just wanted to say a HUGE thank you for this comment - I saw it many months ago and had to type "The Steady Coach" into the search bar on UA-cam because I had no idea what it was! All I can say is that it has been truly life-changing for me and I've been watching her videos ever since. I've come a long way in my recovery and have finally turned a corner to have many more good days than bad. I guess you never know how much a simple comment will help someone else & yours truly made the difference for me!! ❤
Omg….this is what I have!!! Finally…someone that sound like me. Omg. Can you help me then…. Start me somewhere, I’m from Newfoundland Canada. I have had this for 8 years, seen many doctors and never had a diagnosis.
why i suffer mdds after driving sometimes it last hour or even days when im back driving the symptoms almost disappear but when i stop ang get out of the vechicle it almost automatically back huhu
Hi there-We recommend consulting with a qualified health professional. Here is a provider directory by the Vestibular Disorders Association: vestibular.org/healthcare-directory/
I have been on Diazepam for 9 years now. I take between 5 to 10 mg a day, if my symptoms are low I do not take at all. but does not seem to be helping as much. He does not want to take me off of them for I think he fears of severe issues with my brain. Not sure where to turn because I am completely homebound. my life has been ruined for over 10 years. If you have a recommendation's for Dr. in New Jersey I would appreciate it. I have a very complex history. Thank you for the podcast.
I went on a 4-hour flight then a 5-hour car ride and another 5-hour car ride and then a 4-hour flight within the span of a week. How long do you think this will last? I am scared it will be a while...
My "spinny" lasts about 2 weeks after a motion event (plane, boat). I would describe it as highly annoying but not debilitating. I do get a few seconds to minutes of dizzy from elevator use also. Going to a chiropractor tomorrow. We will see if there is anything he can do.
Thanks for explaining this to us! My doctor just kinda went yea u probs have this thing byeee and nothing about how to treat it or if this will impact my life more seriously at all -_-
my bestfriend has been at sea from 18yrs old to 50 yrs on a Super yaucht as a chef and retired 3-4 yrs ago, suddenly 3.6yrs later she has severe vertigo, but no doctor can diagnose her costing $4000 in tests so far had no answers. Again the doctors dont know her very well, or her work history working on Huge yauchts for 30yrs. From the Americas cups to travelling 8x around the world. I googled "do sailors get vertigo?", and up came many yes yes yes, then MDDS lead me here. Shes on land now, but why 3.6yrs later her dizzyness excellerated expontentionally drop kicked her to bed, she so fit. Apparently it strikes most at age 50+ So I wondered if the computer was part posture problem because her neck hurts, the yoga class works against her the wrong stretches , the long walks, On a ship you walk differently and this week she is very unwell, I mean shes a health nut in a shell, Very worried my bestfriend goes downhill in the last week to 5 days of hell she said reducing her to bed. Thank you for explaining. xxx God u ROCK!!!!!
Can this be temporary? I’m so scared I’m a teenage boy who has this a day after flying. Does it mean i’m going to be off balance for the rest of my life. I hate my life
Mine resolved for almost 2 years and just came back after a week of kayaking. I'm hopeful it will resolve again. Lots of people experience remission. Try to stay calm and rested and continue exercise and focusing on things you love. Meds work for some people.
Jackson T - yes, MdDS is often temporary IE people go into remission and don't get ill from this again. Fear is not your friend so although it's natural to feel that way, if you try to live a normal life and put the fear out of your mind, you have a good chance of full recovery, especially since you are young.
Get help ASAP! I couldn'd get help for MdDS, because I didn't know I had it for 18 months and my doctor didn't take it seriously. He just thought it was an ear infection or the like. Just needed rehab... nope, didn't help, but to walk better, while continuing to get worse. Get help, and get a second opinion if you can.
@@kyledailey It actually went away completely about a week later. My family members experience it a lot so idk if it can be hereditary but my mom had it for 2 and a half weeks after a month cruise.
@@jacksont319 That's great. I've had it for over 3 years, 7 months. I've only had 2 times were it felt like it was almost gone. I have so many symptoms, it's blowing how many. Most mindhave around 25, but I have 23 to 28 everyday. Enjoy your health, while you can.
This is really heartbreaking breaking that there is no exact treatment for sufferers may some inventions some day work for everyone because it’s to time taking and also with successful treatment relapsing takes place 😒😒
Very misunderstood, I am very doubtful for the medical community will help me. I have to solve it by myself, yet, very hard because of this strong+hidden disability. They always say it's my anxiety, when that is the secondary from all the misunderstanding or blaming me for being stressed with this problem. Yes, at 10:03 :-) a bit about my type. Driving or riding a train reduces the G-force pushing, not the same as vertigo swaying and bobbing feeling. Men have it, but we just get blamed for it or put down for being a 'cry baby', 'wimpy', so I believe men just hide it or commit suicide. I don't want to do either... very depressing.
Kyle - I hear you. MdDS is still not well understood by many doctors and although that's the case with a lot of rare conditions, telling you 'it's anxiety' or blaming you for feeling stressed is not OK.
I’m a 30 year old male and I have MDDS. Anxiety plays a part in this Kyle, it sucks but it’s the reality of most conditions. Stress increases the symptoms
@@pollymoyer4791 Thank you for reading my comment. That helps with my hope, that people may understand me, and gives me more will power to push through my pain and disfunction. I need someone that is willing to hear me out. Polly Moyer, can I subscribe to your channel?
@@alexmurphy5289 Alex Murphy, thank you for replying. I'm so sorry you have this too. I would love to chat with you, about your symptoms, and anything you want to about spontaneous MdDS. How can I get in contact with you, without posting contact information publicly? Also, may I subscribe to your channel? Hell, I'm going to, and you can block me if you feel like it. I hope you don't :-) Take care Alex Murphy.
@@kyledailey You are very welcome and if I have helped a bit that makes me happy and even more motivated. Although Alex is right, anxiety and stress are often the result of not feeling understood rather than the cause of the symptoms. I know how lucky I am that I don't get anxiety from having MdDS/migraine (other than situational anxiety because I can't work or fulfil family roles as well as I'd like to) but I know others are not so lucky. I don't have a channel but you might like to follow the Life Rebalanced Docuseries on VEDA - there is some excellent work there :)
highly reccommend looking into cervical instability as the missing piece ua-cam.com/video/Eb6VlhWsYxY/v-deo.html and ua-cam.com/video/pQvv_r4w8Qo/v-deo.html
this is a joke. them chuckling constantly about this horrible syndrome; seriously they have no understanding whatsoever. a patient with this should always be on the panel during discussion
Very interesting to hear about the work at Otolith Labs :) When I contacted them a while ago (regarding a device they were using to investigate motion sickness in passengers of driverless cars which they discovered could also be a potential treatment for Tinnitus) I wondered if their devices could help with MdDS (for some of us, if not all) and they thought they could, which was/is exciting :) Meanwhile I still have concerns about the over/misdiagnosis of PPPD and the subsequent loss of data about MdDS. Losing data about any condition is bad but with a less common one it can be devastating. It was interesting that Dr Beh mentioned the 'hallucinations' theory re MdDS, although I think it's a fairly old theory and that others have taken its place. A friend who researches Schizophrenia was fascinated by it, tho'. Edited to add that there is excellent information about MdDS in the crowdfunding campaign:
Yes, I read a personal blog of a lady that did ayahuasca and then her brain reacted in this way. she describes her symptoms has mdds but who knows it could be something different.
![Lp. Сердце Вселенной #60 РОЖДЕНИЕ ЛОЛОЛОШКИ [Финал] • Майнкрафт](http://i.ytimg.com/vi/YoR0pAV9FVQ/mqdefault.jpg)
I am 75 years-old and developed MdDS over ten years ago without ever disembarking from a boat cruise. My condition has been progressively worse to this day. My plans for retirement have been ambushed by this dreadful disorder. If you share my grief, my heart goes out to you.
Hi Harry-thank you for sharing your story. Please know that you're not alone. Well wishes to you!
I am 71 & this started about a yr Ago !! I feel the same as you...finally can do alot of the things I never had the time or money to do BUT NOW I GOT THIS CONSTANT 24/7 SHAKING !!! It has overtaken & ruined my life !!! BUT I WILL BEAT IT !!!! PERIOD....
Treatment discussion starts at 15:30
I got MDDS after a 14 hour plane ride in 28 August 2018. I’ve had upper cervical specialist chiropractic treatment which rid me of the migraines and I was able to go into a supermarket again.
Tinnitus is severe too. Pressure in my head.
I’m trying the stripes next.
I have also been going to the Energy Enhancement System for 2 hour sessions. Scalar waves and photonic light. It’s has definitely helped lower the rocking symptoms and pressure in my head.
I will keep going as I’m desperate to be ‘normal’ again. It’s a horrible silent suffering syndrome. Everyone sees you as normal and can’t understand what it’s like.
Thanks for all the info. They really haven’t heard about it here in Australia so I’ve had to work it out myself. Very isolating.
OH MY....you have a lot of places in Australia !!! Google MDDS AUSTRALIA to start !! Good Luck & God Bless !!!
Were you able to solve your MdDS?
@@hokuk9training970 no it’s now almost 6 years with this chronic condition
I just had MDDS for about 1 week ago, but as of writing I'm feeling super duper a lot better, almost no shaking or bobbing at all. I think what helped me was the standard optokinetic and vestibule-ocular exercises I applied. Hopefully the VR Optokinetic therapy gets improved and be brought to maturity.
Dr. Beh was my doctor at UT southwestern and he’s awesome
I enjoy all the personalities, laughs, and knowledge here. Thank you
Symptoms are aggravated from many of the same triggers as those with migraines: weather/barometric changes, stress, lack of sleep; computer lighting, etc.
One doctor visit away from a diagnosis. It seems to be pointing to spontaneous MdDS after a brain tumor where they surgically removed my vestibular nerve. Rocking, bobbing, and swaying ever since. It’s debilitating, and life changing.
I have been suffering with MDDS on and off for 8 years. This has been brought on by travel on a boat and snorkeling while in Hawaii, it started February 13 and is still there today May 10 . Every time this has happened I was on a boat and long car drives, each trip over an eight year period to Hawaii , Alaska, Hawaii, Florida, Hawaii .I found relief using the OKN stripes that were suggested by another vestibular specialist, This is the only thing that has helped, but I still feel it when I am very tired or low blood sugar. My MDDS has lasted as long as 4 months I hope it goes away soon….
I have been trying to see him for quite some time to help me with my dizziness. I feel I have MDdS and Vm and am desperate at this point. Glad he is sharing info via UA-cam for those of us suffering
You get better?
@@arturoortiz1251 no
@@Kenoqueen check out the steady coach ❤
Do you have any improvement now?
Hi, just wanted to share that I suffer from mdds as one of the debilitating symptoms from a spinal csf leak, which causes intracranial hypotension, not enough csf fluid surrounding brain. And in my csf leak support group of 7000 people this is a super common symptom among us. Just thought I would share.
ua-cam.com/video/pQvv_r4w8Qo/v-deo.html and ua-cam.com/video/Eb6VlhWsYxY/v-deo.html may possibly offer a partial explanation
Thank you for making this video. I got off a cruise last week and the sway won't stop. Hopefully, it will go away within a month, and if it doesn't I will see my doctor.
I began having mdds symptoms within a day of my first vaccine. Symptoms got significantly worse after the second dose. I have no prior history of vestibular problems. Still in the process of getting a diagnosis. Thank you for addressing this. Appreciate the information!
I have also been experiencing Mdds one day my first shot have not got a 2nd as it is still here.
Omg I’ve had the same thing!!! Been going on for months now!
I also got this from my covid vaccine. 33 and otherwise in great shape and healthy. total bullshit.
Its another of the Neurological side effects of the vaccine. It was once described as “Rare” but no longer, (which makes me consider my vestibular system may have been vax injured yrs ago making me susceptible). My mdds began 20 yrs ago after a daylong whitewater rafting trip. Took me a few years to improve and regain. Since then I do daily;balance, stretching, & vestibular/eye exercises to maintain. Dr Danielle Tate mentioned a patient had improved physically in their balace etc, Yet they said they felt the same symptoms still in their head. I can understand this.
Thank you for letting these great topics!
I think I have MDD, I was diagnosed with VM about six months ago , although I have had the symptoms for over 18 months, I feel as if I’m swaying or rolling most of the time, although usually after sleeping I’m fine in the morning and symptoms gradually get worse during the day, I do walk every day and get the sensation of walking on sponge but also creeping numb feelings in my feet and mostly back of the legs which disappear overnight, I wonder if uni have come across such leg sensations before. I get a headache, occipital most days which gets worse at night, but again goes by morning and then gradually comes back most days. I’m not on any medication at present apart from calcium channel blockers for raised blood pressure which is linked with the headache spasmodically at night. I work part time as a therapist and usually on Zoom.
I enjoyed the presentation, so helpful and have also found your book on VM very informative. Thank you, everybody needs to know more about VM. I live in London UK.
I have a lot of your symptoms for about a year now dizziness 24/7, I try to walk everyday and like you feels like walking on sponges along with numb feelings in my feet, those improve when taking shoes off. Sure is horrible
Same
I feel exactly the same a specialist diagnosed me with VM but I'm convinced it's mdd I feel fine in the morning but after I go work I gradually feel worser and worser at night is horrible I'm always watching the clock for bedtime it's like it's the only cure going to bed then waking up to the same thing.
I work as a forklift driver so motion is always there I like my job but it's so frustrating knowing it's going to cause me problems.
I suffer from mal de debarquement syndrome since 2018 after a sailing boat cruise of 7 days and a subsequent flight to come back home. Symptoms have never subsided since then. My life has changed forever since this illness. Some periods the symptoms are bereable and at a baseline where I can function. Some periods the symptoms are unbereable.
I had MdDS for a long time but symptoms were very light, enough for me to ignore it. Then I was on a plane and after the return trip there was significant change and it was a lot worse. Then I moved to another state and drove the whole way and now its like everyday, every second its pulling and pushing me around. Its terrible
Me too
I’ve had it for ever since i could remember and I thought it was just normal
How are you dealing with it? The pushing and pulling and visual dizziness is so torture... How do you cope with it?
@@k.baller5140 I don't know if this would work for everyone but I found that exercise helps a lot. When I do planks and strengthen my core that helps. And then every day I balance on one foot for as long as I can and then do the other. It helps by a lot.
@@Applecornflakes maybe you should try mt sinai in New York
Has anyone ever heard of this being started related to the use of psych meds? I’ve had this for 25 years. It Started after tapering off an anti depressant and a benzodiazepine which I took for a short time. When i tapers off, I told the dr of the boaty waterbed pulling sensation , I was told it was a worsening of anxiety and to get back on the medication. I got better for a year tops maybe, since that first year back on the anti d/benzo, I have been battling a worsening of the condition, at first tolerable but slowly completely disabling for all those years, trying one anti d after another. I am looking for hope.
Hi I started rocking from the side effects of sertraline and am still rocking three months after stopping them. I’ve been trying to find someone that has had the same experience from taking antidepressants. When you try to sleep do you feel like you’re going to float away and pressure in your ears?
Thank you Dr. Shin Beh, MD for what you say at 3:05 :-)
Part of the name -debarquement - is replaced with spontaneous gravitational pushing from all directions for me.
With the most painful symptom being a sense of metal, rocks, or sand blasting through my head with varying speed, force, pain, and direction. Many other symptoms too.
Super fascinating unless you actually have extreme MDDS that ruins your life.
Yes, but at least they care enough to talk about it.
I'm very depressed with almost all my experiences with my local medical community. I can't work, so I'm on government health care. So you don't have much freedom to choose who you can see, and their diagnosis. MdDS [Spontaneous for me], has made life very difficult in so many ways. From not believing I have anything that bad, misdiagnosis, telling me to relax & it will go away ( LOL ) BS, 24/7 pain without any pain meds ( don't and do want some, maybe ), and just trying to describe so many & varying disabling symptoms.
I have extreme mdds... Everyday is torture... Makes me want to end life
What is extreme MDDS? Mine began in 1982 and has been every single day 24 seven.
@@k.baller5140 how are you doing now? I'm dealing with this as well...
Excellent show! Always great to learn from Dr. Beh and you both!
I have been diagnosed with vestibular migraine...I have all the symptoms of MdDS as well....the rocking motion, walking on a trampoline, etc and my balance issues were mitigated while I was on bezo's...my neuro didn't want them used long term so I tapered off and am on Zoloft...the rocking motion/trampoline etc. has returned, but my balance has not been impacted. I assume the Zoloft is helping the balance issue but not the rocking/trampline issue...I recently went on a car trip, 12 hours each way and the MdDS symptoms worsened, it was like they were on steroids...I'm home now, a couple of days as of this comment and it's improving...but I think I may need to go back on benzos to get relief if it doesn't settle in a few weeks.
Have there been studies on balancing hormones and MDDS going away?? If this shows up in perimenopause and menopause women.
I got it in 1982 and it seems like it might be from stress. I never heard the term until about 2004 so I didn’t understand what it was or how I got it or what to do about it. I am dizzy every single day 24 seven and also have the gravitational pull or feeling like I’m being thrown across the room when I’m sitting or feel like I’m slipping when I’m not moving or feel lightheaded like I’m going to faint and always have brain fog 24 seven. I also vibrate at times and it’s really difficult to sleep for the movement, the vibration, and feeling like I’m going to fall out of bed like it’s slanting.
Do you feel swaying when standing still?
Do you feel ground is bouncing when walking?
Hi, i would like to share my experience. I had panic attacks , anxiety and depression years ago and after that i developed chronic dizziness. For many years doctor couldn't not diagnose , they only say that it is due to anxiety. I couldn't agree to them anymore as my anxiety have been cured. I am experiencing the symptoms since 2014. There is no relief in my symptoms. I just feel off balance, unsteady feelings, swaying left n right, rocking and feel as if my legs are not grounded on floor and the floor feels like moving upside down like a seasaw. The symptoms increases when i walk or travel but that is not only case , it comes even i am not doing anything. What best i try to do is just calm down, do positive affirmations but this is not working. I am confused if it is pppd,mdds or migraine.please help
You mentioned the mastoid vibration test. If that makes you more dizzy on one side of your head but not the other, what does that mean?
Just watching this video - helpful information. Had random onset MdDS in 2018, but didn't learn what it was until 2019. Over this last year I am now getting migraines, which wipes me out even more! Dr. Beh is three hours away - I think it's time to make an appt! Can someone tell me the difference between VOR and VRT?
He diagnosed me with spontaneous MDDS. It is definitely a struggle.
How are you doing? any treatment?
what was your onset?
I am more or less in your same position (3 months after BPPV)
Not from a cruise had it 9 months ago after the new jab still have it.was always healthy and physically fit .My life changed after that night.
Me, too.
how long was the cruise?
Anyone here that has/had spontaneous MDDS use brain retraining (DNRS) or heard of (German New Medicine) GNM to heal? I am curious what Dr. Beh has to say about it? I have reason to believe spontaneous MDDS happens when the nervous system is activated due to a "threatening" (very stressful) situation, so the fight or fight kicks into high gear and affects the amygdala even possibly the cerebellum. I have spontaneous MDDS and VT never really worked for me because I don't feel out of balance and I can drive and exercise just fine. It's the constant internal movement that is always there.
Yes I've watched Dr Gates and he does a good job of explaining what he has seen and worked with + what other dr.s have found out as well. I've been affected since 2017 . My daughter found this after searching for 2yrs. Brain retraining is a good approach.
Also, have been suffering symptoms since 2008. I noticed the first time traveled via airplane post TBI.
My name is Chris. I have been suffering for years from motion triggered swaying. I have avoided air travel for years because of the symptoms it causes me.
Most of the time it feels like I’m walking a trampoline and being pulled forward. My head movement seems exaggerated when I’m sympathetic. I also have had issues similar with feeling like my eye movement is out of control.
I do suffer migraine but triggered by going from dark to light. I suffer anxiety and depression. Ironically I have to fly for my appointees. I have had a an eval at HomeBase in Boston by a Vestibular PT and have many issue. I just want to do something that will shorten my symptomatic period. So far my longest symptoms are up to 3 months and as short as two weeks.
Oh also walking on docks throw me off. Cruises suck. Duration of flights and cruises determine the length of my symptoms. The cause of symptoms like boat or plane when continue make it worse. Car rides for some reason make it better. Walking makes it worse. Cars seem to the only thing that helps. Definable symptoms worsen as the day wears on.
I also have had a TBI. I suffer from endocrine dysfunction. Low growth hormone, high prolactin, cortisol collapse syndrome. I also have migraines.
I just found one funny thing, I CAN nod my head a little and it’s help like 99%, the more funny thing is that iDONT have to actually physically nod, just think, like imagine, that I’m nodding my head and it help like 70-80% of my symptoms
What is a VOR machine ?
I have it for 2.5 years. It started after I missed the bottom stair coming down and took some steps across a door space and banged the left side of my head, flat against the wall. I did not fall down, was not knocked out. About 3 weeks later I noticed when I stood at the sink, washing up that I had the kind of motion feeling that I had had when I was in my 20s and flying regularly. I had not had it later in life until this bang to the head. I am 75 years. Anyone else had it start after a minor head injury ?
Thank you for sharing your story. Symptoms may vary from one person to another, but you're certainly not alone. Well wishes to you!
Yes, a deep filling rattled my head and bam!
Amazing little episode. Had a patient today I was evaluating and I was stuck between vestibular migraine and MDDS since they had photophobia motion sensitivity yet reported oscillating and feeling like they are on a boat. Negative for BPPV, ruling out hypofunction next visit, the vestibular world is full of complexity haha.
The steady coach has a lot of amazing things to say about MDDS! About how to actually heal.
Thank you for sharing!
I just wanted to say a HUGE thank you for this comment - I saw it many months ago and had to type "The Steady Coach" into the search bar on UA-cam because I had no idea what it was! All I can say is that it has been truly life-changing for me and I've been watching her videos ever since. I've come a long way in my recovery and have finally turned a corner to have many more good days than bad. I guess you never know how much a simple comment will help someone else & yours truly made the difference for me!! ❤
@@jillianeberlin2519 I’m SO happy to hear that 😊😊 thank you for sharing!!
Omg….this is what I have!!! Finally…someone that sound like me. Omg. Can you help me then…. Start me somewhere, I’m from Newfoundland Canada. I have had this for 8 years, seen many doctors and never had a diagnosis.
Me too experiencing the same. I am suffering from this 9 years.
why i suffer mdds after driving sometimes it last hour or even days when im back driving the symptoms almost disappear but when i stop ang get out of the vechicle it almost automatically back huhu
Hi there-We recommend consulting with a qualified health professional. Here is a provider directory by the Vestibular Disorders Association: vestibular.org/healthcare-directory/
I have been on Diazepam for 9 years now. I take between 5 to 10 mg a day, if my symptoms are low I do not take at all. but does not seem to be helping as much. He does not want to take me off of them for I think he fears of severe issues with my brain. Not sure where to turn because I am completely homebound. my life has been ruined for over 10 years. If you have a recommendation's for Dr. in New Jersey I would appreciate it. I have a very complex history. Thank you for the podcast.
Have you contacted Mt Sinai - upper east side NYC ? They have a specialty clinic for MDDS.
I went on a 4-hour flight then a 5-hour car ride and another 5-hour car ride and then a 4-hour flight within the span of a week. How long do you think this will last? I am scared it will be a while...
Are you better?
There is no rhyme or reason - I have had since 2015
My "spinny" lasts about 2 weeks after a motion event (plane, boat). I would describe it as highly annoying but not debilitating. I do get a few seconds to minutes of dizzy from elevator use also. Going to a chiropractor tomorrow. We will see if there is anything he can do.
Hope you're feeling better!
Any update
@@myflymkultra268 have had 2 plane trips of 5+ hours without any dizziness. I will avoid boats for the rest of my life.
Thanks for explaining this to us!
My doctor just kinda went yea u probs have this thing byeee
and nothing about how to treat it or if this will impact my life more seriously at all -_-
Thank you. Very informative, but at the same time very depressing.
my bestfriend has been at sea from 18yrs old to 50 yrs on a Super yaucht as a chef and retired 3-4 yrs ago, suddenly 3.6yrs later she has severe vertigo, but no doctor can diagnose her costing $4000 in tests so far had no answers. Again the doctors dont know her very well, or her work history working on Huge yauchts for 30yrs. From the Americas cups to travelling 8x around the world. I googled "do sailors get vertigo?", and up came many yes yes yes, then MDDS lead me here. Shes on land now, but why 3.6yrs later her dizzyness excellerated expontentionally drop kicked her to bed, she so fit. Apparently it strikes most at age 50+ So I wondered if the computer was part posture problem because her neck hurts, the yoga class works against her the wrong stretches , the long walks, On a ship you walk differently and this week she is very unwell, I mean shes a health nut in a shell, Very worried my bestfriend goes downhill in the last week to 5 days of hell she said reducing her to bed. Thank you for explaining. xxx God u ROCK!!!!!
Can this be temporary? I’m so scared I’m a teenage boy who has this a day after flying. Does it mean i’m going to be off balance for the rest of my life. I hate my life
Mine resolved for almost 2 years and just came back after a week of kayaking. I'm hopeful it will resolve again. Lots of people experience remission. Try to stay calm and rested and continue exercise and focusing on things you love. Meds work for some people.
Jackson T - yes, MdDS is often temporary IE people go into remission and don't get ill from this again. Fear is not your friend so although it's natural to feel that way, if you try to live a normal life and put the fear out of your mind, you have a good chance of full recovery, especially since you are young.
Get help ASAP!
I couldn'd get help for MdDS, because I didn't know I had it for 18 months and my doctor didn't take it seriously. He just thought it was an ear infection or the like. Just needed rehab... nope, didn't help, but to walk better, while continuing to get worse.
Get help, and get a second opinion if you can.
@@kyledailey It actually went away completely about a week later. My family members experience it a lot so idk if it can be hereditary but my mom had it for 2 and a half weeks after a month cruise.
@@jacksont319 That's great. I've had it for over 3 years, 7 months. I've only had 2 times were it felt like it was almost gone. I have so many symptoms, it's blowing how many. Most mindhave around 25, but I have 23 to 28 everyday.
Enjoy your health, while you can.
This is really heartbreaking breaking that there is no exact treatment for sufferers may some inventions some day work for everyone because it’s to time taking and also with successful treatment relapsing takes place 😒😒
Fingers crossed!
Very misunderstood, I am very doubtful for the medical community will help me. I have to solve it by myself, yet, very hard because of this strong+hidden disability.
They always say it's my anxiety, when that is the secondary from all the misunderstanding or blaming me for being stressed with this problem.
Yes, at 10:03 :-) a bit about my type. Driving or riding a train reduces the G-force pushing, not the same as vertigo swaying and bobbing feeling.
Men have it, but we just get blamed for it or put down for being a 'cry baby', 'wimpy', so I believe men just hide it or commit suicide. I don't want to do either... very depressing.
Kyle - I hear you. MdDS is still not well understood by many doctors and although that's the case with a lot of rare conditions, telling you 'it's anxiety' or blaming you for feeling stressed is not OK.
I’m a 30 year old male and I have MDDS. Anxiety plays a part in this Kyle, it sucks but it’s the reality of most conditions. Stress increases the symptoms
@@pollymoyer4791 Thank you for reading my comment. That helps with my hope, that people may understand me, and gives me more will power to push through my pain and disfunction. I need someone that is willing to hear me out. Polly Moyer, can I subscribe to your channel?
@@alexmurphy5289 Alex Murphy, thank you for replying. I'm so sorry you have this too. I would love to chat with you, about your symptoms, and anything you want to about spontaneous MdDS. How can I get in contact with you, without posting contact information publicly? Also, may I subscribe to your channel? Hell, I'm going to, and you can block me if you feel like it.
I hope you don't :-)
Take care Alex Murphy.
@@kyledailey You are very welcome and if I have helped a bit that makes me happy and even more motivated. Although Alex is right, anxiety and stress are often the result of not feeling understood rather than the cause of the symptoms. I know how lucky I am that I don't get anxiety from having MdDS/migraine (other than situational anxiety because I can't work or fulfil family roles as well as I'd like to) but I know others are not so lucky. I don't have a channel but you might like to follow the Life Rebalanced Docuseries on VEDA - there is some excellent work there :)
I was never on a ship never. Got it after the new jab so stop comparing us to rich cruses please don’t.
Are you any better now?
I have mdds since 2019 non stop. And it’s is more and more incapacitating. It’s not fun you laughing at us.
I have this 17 months after Pfizer vaccine. Seems I’m not alone…
Are you doing any better now? Were you diagnosed by anyone?
highly reccommend looking into cervical instability as the missing piece ua-cam.com/video/Eb6VlhWsYxY/v-deo.html and ua-cam.com/video/pQvv_r4w8Qo/v-deo.html
this is a joke. them chuckling constantly about this horrible syndrome; seriously they have no understanding whatsoever. a patient with this should always be on the panel during discussion
Very interesting to hear about the work at Otolith Labs :) When I contacted them a while ago (regarding a device they were using to investigate motion sickness in passengers of driverless cars which they discovered could also be a potential treatment for Tinnitus) I wondered if their devices could help with MdDS (for some of us, if not all) and they thought they could, which was/is exciting :)
Meanwhile I still have concerns about the over/misdiagnosis of PPPD and the subsequent loss of data about MdDS. Losing data about any condition is bad but with a less common one it can be devastating.
It was interesting that Dr Beh mentioned the 'hallucinations' theory re MdDS, although I think it's a fairly old theory and that others have taken its place. A friend who researches Schizophrenia was fascinated by it, tho'.
Edited to add that there is excellent information about MdDS in the crowdfunding campaign:
Yes, I read a personal blog of a lady that did ayahuasca and then her brain reacted in this way. she describes her symptoms has mdds but who knows it could be something different.
Hi, what crowdfunding campaign? Looks like link is deleted. Thanks
@@steinsoz The crowdfunding has closed now. Let's hope there's more central research funding available soon.